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DeuxofUs

DeuxofUs

Well-known member
Joined
Feb 20, 2011
Messages
135
Location
Encinitas, CA USA
It's been about 3 1/2 months that I have been living with my diagnosis. I am much more accepting now of my situation and thanks to this AMAZING forum, I am better off than I would be had I not found you guys. Reading about all the people post-surgery has helped me understand what I am up against and to realize that this really isn't the end of the world like I thought it was on day one. You should have seen me, I was a terrible mess!

But, I hate that it's the background noise in my daily life. I feel flawed enough that I feel fragile. I stopped exercising altogether because I am afraid that something might happen. I am fairly active though...meaning, I will go nuts and clean my house although I am thinking of getting a maid(which will come in handy when I am recovering). I do notice that I poop out a little faster than usual but I can't tell if it's a mental thing or truly my valve.:confused2:

Just about everyone in my life knows about this now and they all say the same thing... "I can't believe you have such a good attitude about this"... but inside, I am dying... I am scared that I won't wake up (if I don't I would never know anyway) but I have a zest for life....

I just want to do this and get on with my life and I know from what everyone says, waiting is the hardest part. This REALLY is the hardest part of this whole thing. This sounds weird but I am jealous of everyone that has got to go through their surgery and recover...
 
When I got my diagnosis it was also very hard. I think it is for anyone who has heard the news you are going to need open heart surgery. I knew my surgery would be sooner than later given the size of my aneurysm, so it was not that bad. I was having a panicked night and called my family doctor. He suggested and called in a prescription for me for Clonazepanm???sp
I picked it up, but never used any of the pills. It sounds bad, but I had a few drinks most nights while waiting for the surgery to help me relax and maybe sleep.
I did not know about this forum, or others I have found since my surgery! Good luck and hope you are OK.

Cam
 
I know exactly how you feel. I had previously taken fluoxetene (prozac), but this time needed double the dose, and still thought about dying just about every day. And although it seems a cliche it really did seem as though my life was passing before my eyes as
happy memories going back over 50 years began to come back into focus - yet suddenly I had a date and even more suddenly it came forward 10 days. I am now 11 days out, the coughing has stopped and I am in very little pain. I am also being VERY well looked after. I can hear my 'tick' now despite the background noise from the PC and it is a welcoming reminder of my renewed life.

The surgery really will go well and you will be surprised how quickly you recover.
 
I think you are absolutely right. Waiting is the hardest part. Glad you can vent about it with people who understand on this forum. Best wishes to you in the meantime!!
 
At the time I found out I needed surgery, I thought it was coming too fast. Now looking back on it, I am glad that I only had a little less than a month from start to surgery, as I think I would have had a very hard time with the wait. For me, I also got a prescription of clonazepam before surgery, but it was mostly for sleeping. I couldn't fall asleep, even with sleeping pills, as my mind wouldn't shut off. The doc prescribed clonazepam, and taking it an hour and a half or so before bed helped me to fall asleep. I haven't taken one since the surgery, but it did help me to sleep before. I know it is something you have heard many times before, but the experience is much easier on you than you are imagining it! I couldn't believe how good I felt compared to my expectations, even the day after surgery. Keep reading and contributing here, and I am sure this will help you to cope!
 
DeuxofUs said:
It's been about 3 1/2 months that I have been living with my diagnosis. I am much more accepting now of my situation and thanks to this AMAZING forum, I am better off than I would be had I not found you guys. Reading about all the people post-surgery has helped me understand what I am up against and to realize that this really isn't the end of the world like I thought it was on day one. You should have seen me, I was a terrible mess!

But, I hate that it's the background noise in my daily life. I feel flawed enough that I feel fragile. I stopped exercising altogether because I am afraid that something might happen. I am fairly active though...meaning, I will go nuts and clean my house although I am thinking of getting a maid(which will come in handy when I am recovering). I do notice that I poop out a little faster than usual but I can't tell if it's a mental thing or truly my valve.:confused2:

Just about everyone in my life knows about this now and they all say the same thing... "I can't believe you have such a good attitude about this"... but inside, I am dying... I am scared that I won't wake up (if I don't I would never know anyway) but I have a zest for life....

I just want to do this and get on with my life and I know from what everyone says, waiting is the hardest part. This REALLY is the hardest part of this whole thing. This sounds weird but I am jealous of everyone that has got to go through their surgery and recover...
Click to expand...
Deux of Us,
I completely relate to how you are feeling. When I got my diagnosis of severe stenosis, I was told that OHS would be within 6 months to 2 years. After the shock wore off, I thought...how on earth am I going to live through this 'waiting period'. At first, it felt like an eternity! After a number of months of 'freaking out', I then I decided, I am not going to let this diagnosis take over my life. I worked on 'allowing myself worry time' (of course this didn't always work) and then the rest of the time was for me and my family and friends. I took this time as an opportunity, to keep myself physically and mentally healthy. I also told myself that I would try and live in the moment between the cardiac appointments rather than living/worrying about the future. I, too drove myself crazy trying to figure out whether my fatigue was a symptom or just plain exhaustion from all the worrying. However, I continued activities at a dialed down pace (as per cardio's recommendation), such as walking, recreational cycling and also took up yoga. This helped give me some sense of 'control' in helping me take my life back.

Waiting is very hard...I waited a year and a half until the surgery day. However, when I look back, this allowed me the time to garner as much knowledge on my cardiac condition as possible along with the fantastic support of the individuals on this forum...and come to peace with it.

I sincerely hope you can find some kind of silver lining within this waiting period.


Thinking of you,
P.S. Just want to add, there is no harm in speaking with a professional during this time if you think it might help (as others have stated). This is the time to use all your resources.
 
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It really is odd what people say that they think is kind but makes me feel freakish OFTEN I hear:
"how can you live like that?" (with no sternum)
"you have a great sense of humour" (for the americans that is humor)
"can I touch it" (Ialways say yes to the pretty girls)
"Greg, are you still alive"
and many many more that only add up to misery BUT I grow a thick skin and think of all the blessings I have had since my life was saved and turn the other cheek DEUX there is so much for us to be thankful for I don't have the time to be down I am going to live all the life the Lord will give me to the fullest of the ability He has granted me
 
Thank you all for your wonderful replies. You know, even talking to my husband, he can't totally understand because... well.. he isn't going through it. It's so nice to talk to people and have them FULLY understand what I am going through. This stuff is not easy.

Some days I am OK and others, not so much. There is no rhyme or reason as to when I feel bad and vulnerable but right now, I am going through a rough patch.

I believe you all when you say the surgery isn't that big of a deal as we think it up to be. I actually picture myself laying there with tubes in my body, unable to speak. WHY DO I KEEP PICTURING THIS????? I guess when surgery time comes, one doesn't have time to think of all that non-sense. That's for the nurses and doctors to worry about during their "just another day in the office" shift!

Thanks again for letting me vent. :smile2:
 
BTW, I do have anxiety medicine, I just don't like to use it because I am afraid of becoming dependent on it. I try to give myself breaks but I think it's the breaks that make things worse.
 
I think I can relate to how you're feeling DeuxofUs as I seem to be feeling similar - going through days when the anxiety completely overwhelms me. My doctor prescribed Lorazepam to take when it gets so bad - it helps for the day I take it so it's not really a solution, just a prop. This forum definitely helps knowing there are others feeling the same way and that I'm not abnormal having these anxieties.

Anne
 
My cardio wanted me to have surgery much earlier than I did because my symptoms were horrible. But my Mom had
passed away in 2003, then my horse passed in 2004, and coping was becoming very difficult. It was late 2005 before
I finally got it done after my GP doc "laid it on the line".
Try to keep your mind busy and know that there is a great life ahead of you. :)
 
Deux - I sort of know what you're going through. I spent over 9 years that way, but I found ways to deal with it. For most of that time, surgery was just "sometime in the future, years out." It wasn't until I started noticing my energy decline that it became real, and by that time I had become quite adept at "living around it." I sort of compartmentalized my mind and did not dwell on it. I have to say that I had a rough time for the first 6 months or so after diagnosis, then didn't really worry about it until I was making the arrangements for surgery. Once all the pre-op decisions were made (valve, surgeon, hospital, dates), I was able to go back to my "chill" mode. I had made the decisions, had a plan, and only had to go do it.

If all else fails, I would also suggest that you make an appointment with a psychologist (if your insurance will conver it). They can help by teaching you behavior-modification techniques that can help you deal with the issues.
 
I totally get what you are feeling. I waited 14 YEARS! They told me to expect surgery within 5 years, but it ended up being a 13 YEAR wait.

How did I spend my time?

After the first couple of years, I generally quit worrying so much except for the week or two leading up to my annual check up.

I did lots of research and educated myself and found this forum. (YAY)

I started working on my bucket list, and I quit putting off those vacations.

I also learned to be grateful and relieved everytime an annual echo/checkup went by with no significant change. I looked at it as one more year that VR technology was being improved and my surgeon was practicing on someone else. It's all in how you look at it. Being in the waiting room a long time can also be a blessing.

Hugs.

May you find peace with time.
 
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I sooo sooo understand your anxiety. I learned my valve was going bad and cardio watched it for two years. We thought it was stable but then went bad fast. Frequent echos kept showing more regurg and finally he gave the word I'd have to undergo a second OHS. From the day he said that until surgery was just about a month and it was very stressful. I had a hard time waiting and just wanted to get it over with. All of us who say the wait really was the worst part mean it, at least mean it as to our own experience. Take your anxiety meds when you need them. If they don't make them for situation such as we endure waiting for OHS, then for what reason are they used?

All best wishes.
 
It is the hardest thing ever! Even though if you don't directly think about it, it is there 24 hours a day. The family doesn't have a full concept of it. I am still wondering how I will make it 2 1/2 more weeks. Thought about asking for something but the preop letter states not to take medication before all the preop testing. Hang in there.
 
your original post is basically exactly how i felt and often still feel. My quality of life was in the toilet for at least a year or two after I found out. I pretty much crumbled for a while. I still slip in and out of pretty bad bouts of depression and anxiety about my valve/aorta. FWIW, I still worry about being symptomatic... it's pretty much always in a dark corner of my mind
 
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This is my first posting, I am new to you all and glad to have found you. I moved to France 2 years ago, and am now in the same boat as you; surgery scheduled and in a holding pattern for the next four months. I was diagnosed in January, and have gone through so much emotions. I have also done exhaustive research, found my surgeon and hospital, made my valve decision, spoke at length to surgeons across the globe about aortic root replacement, and then finally made my decison and date.
But I have struggled emotionally and am still not out of the woods on that one. I do not sleep well (going to take the advice here and speak to doc about this), have all kinds of fears of complications, and not waking up, and things going wrong. I am sad easily about it, can cry at the drop of a hat, and meanwhile must stay strong and act "normal". I have three small children, with one diagnosed also with bicuspid valve, so do not want to worry them with all this. I just want them to have a normal time for now and have not even told them anything yet.
Also to add to my worries is that I will be out of the home for six weeks. Here in France, they send you to a rehab facility for four-five weeks postop to healing, supervision, conditioning, wound healing. I have visited the place and it is very nice, kind of like a Holiday Inn with docs, nurses, gyms, and nature trails. It looks great, and I think I will not have to worry about some of the concerns that people have when they first arrive home. But I will not be home for 6 weeks for my kids.
Also, I have other fears about the language difference. My surgeon and cardiologist speak English very well, and I can stumble around a bit in French. But what about the nurses, ICU staff, etc? If I am laying there in pain and they tell me specific things, how will we communicate? I get anxiety thinking about this. My husband thinks it will be fine, but I have visions of panic going on with that one!
September is my date, and I would welcome any suggestions from anyone on how to get through my summer without being so worried and preocupied with these thoughts all the time.
 
Understand the don't want to know what the blazes is going on, and read several people used the line to their anesthesiologist, as in "I don't want to rememberer anything...and I think they got their wish. I know I did!
I also can relate to the bummers beforehand, which actually made me move my surgery up. I was so darned tired and spent at least 3/4 of my time in bed ....no denial here... But I realized I might be hurting the rest of my heart while I waited for my valve to thoroughly fail. Recoup after that is taking a little longer than I certainly expected, my tricuspid still doesn't entirely get it's ok to go back to doing what it was made for. It must have been backed up for 20 years!!!
Every surgery is it's own quirky story. When the time comes, Look forward to hearing yours! Welcome to the waiting room. Michellemar
 
After being in the waiteing room for years, MY surgery was so easy, I looked back at everything I did to try and not think about what was ahead of me . On day three or four after my surgery, my second OHS,I concluded just how much of my life was wasted due to thinking about the future. Pick the best hospital and the best surgeon and on day three or four you will see things diffrent. I promise you will look back and say to your self why was I so scared. I let this thing rob me of so much life, Stay active walk eat right, the better shape your in at the time of surgery the easier it will be for you. The clouds are going to go away and the Sun will be so bright!!!!!!!!!!!!!!
 
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